Full transcript of 'I knew that going deaf would kill me' - November 2017
This is a full transcript of 'I knew that going deaf would kill me' as presented by Kate Monaghan and Lucy Martin and first broadcast on 3 November 2017.
KATE - Hello. This month we've got a deaf singer and musician from the recent America's Got Talent final, some Brave Poor Things from Bristol, and a bipolar punk singer of comedy songs. I'm Kate Monaghan.
LUCY - And I'm Lucy Martin, standing in for Simon while he's off on his travels.
KATE - Lucky boy. Lucy how might listeners have come across you before?
LUCY - You may have seen me on the weather.
KATE - The weather?
LUCY - Yes.
KATE - So, are you one of those people who stands in front of the map and points and…?
LUCY - I am one of those, the very one. I also do the radio as well, weather on the radio.
KATE - So, what does doing the weather involve then? Are you the one who actually decides when it's raining or when it's sunny?
LUCY - Sadly not.
KATE - Oh.
LUCY - I wish, I wish we had the power. We definitely get the blame when it doesn't got the way we thought it would.
KATE - Did you have to go to meteorological school for ten years before you were allowed to set foot in the building?
LUCY - No.
KATE - Oh okay.
LUCY - So, I came in on a scheme with the BBC. They were looking for people with a disability to take part in a three-day course and learn about how the weather comes together, because it's not as simple as it looks; there's quite a lot that goes in behind the scenes, so like you say, reading the charts, working out what the weather story is. We do our graphics, we put them together and we also don't have a script, so we come in, working out the story, work out what we're going to say and then get on with doing the pre-records or the lives and the radio. So, there's quite a lot to learn in that. Also talking solidly for a couple of minutes by yourself without anybody else is a bit unusual, especially when you're looking at yourself reflected in the TV screen, so there was quite a lot to learn from there. And then I got offered some training off the back of that.
KATE - Okay. So, the question that's on everybody's lips, because we can't see you right now, is how are you disabled? What is your disability?
LUCY - I was born without - well I would say I was born with one arm, but as it was pointed out to me earlier I actually do have two arms, I'm just missing a hand and forearm. So, I have my right arm down to my elbow but then no forearm and hand.
KATE - Does that mean you're an amputee?
LUCY - It doesn't. Actually a lot of people think that I am an amputee but I'm not; I was born this way. It just didn't grow when I was in my mum's tummy. Very grown-up about it: in my mum's tummy!
KATE - In my mummy's tummy it didn't grow properly. You're not wearing a prosthetic at the moment. Have you ever worn one, given one a go?
LUCY - Well, I don't wear one now. I had one as a child. The advice when you're born is that you should go and get one as soon as possible - well it was when I was born - or else it's really difficult to adapt to. So, I went, got one fitted as a baby; spent a lot of time pulling it off and putting it in the toy box. And then eventually got fitted for one that moved. You move your arm slightly and then it opens and closes like a claw; the one that I had was like a bit of a claw. And so then I took it to school on the first day and my head teacher was fantastic, took me round all the classes, I did a bit of show and tell, gave them a demonstration and then went home. Mum, "How was it?" "Yeah it was great". The next day got up ready to go, mum was like, "Where's your prosthetic arm?" it was like had enough, that's it, left it at home. I found it was just too heavy and it was a lot easier without.
KATE - So, is that it for you and prosthetics now or would you consider one in the future?
LUCY - Well, recently I've been considering getting one because as a lot of people seem to be doing at the moment I've tried to do some yoga and it's an incredibly two-handed kind of sport. Are we calling it a sport?
KATE - Close enough I'd say. It's physical exercise in some way, isn't it?
LUCY - Exactly. And it needs two hands really to be balanced enough. So, I can do it if it's adapted but I find it incredibly frustrating, so I am wondering about getting one specifically for yoga.
KATE - That would be quite expensive, wouldn't it?
LUCY - Well, I'm not sure. I actually haven't researched it at all. I think it might be one of those…
KATE - So, you're super serious about the yoga prosthetic then. Good to know, good to know.
LUCY - A bit of a New Year's Eve resolution that, isn't it? I'll get round to it tomorrow!
KATE - But you're the first ever one-armed presenter there's ever been though, is there? Famously…
LUCY - No, I do often get mistaken for Cerrie.
KATE - Cerrie Burnell who used to be on CBeebies.
LUCY - Yes.
KATE - You don't look much like her.
LUCY - We both have one arm and that's about it.
KATE - Close enough though.
LUCY - Yeah.
KATE - When she started on CBeebies through she got such hate. Do you remember the: get this woman off our screen. You're scaring our children.
LUCY - Yeah.
KATE - Have you had any of that?
LUCY - Not at all. I think she did me a favour and took that for the team.
KATE - Took one for the team there.
LUCY - Yeah. No, I've actually had just really nice comments. I've had a few not particularly nice comments, but for every one of those there have been loads more people either saying, 'that was unacceptable' or standing up for me.
KATE - What have people been saying that's not nice?
LUCY - I've had one or two comments like, 'I shouldn't have to look at that'.
KATE - Was that your arm or…?
LUCY - Probably not; it's probably the package!
KATE - No offence. That's a joke!
LUCY - People aren't going to like you anyway!
KATE - That's a joke. Very attractive young lady. It's all fine.
Do you ever miss your arm when you're trying to say that weather systems are shifting over there? This isn't a visual medium but I am pushing both my hands to show the range. Do you miss it?
LUCY - No. Well, I never had it to miss. I have got an adaptation in the studio here because the clicker that moves the graphics is behind you.
KATE - Oh yeah, because you'll need to hold your clicker and point to what's happening. So, how do you do that?
LUCY - Difficult when you've got one hand. I have a foot pedal that allows me to click through and point freely.
KATE - Clever. But there are other guests with us today so I guess we should really talk to them as well. What do you think?
LUCY - Sounds good. Well, actually I have a bit of script to do first.
KATE - Yeah, you've actually got a script now.
LUCY - I know.
KATE - Unlike the weather, non-scripted, this should be a doddle for you.
LUCY - It's very unusual, very unusual to be reading but I'll give it my best shot.
So, this is the Ouch Talk Show a monthly podcast from the BBC where we assemble an eclectic bunch of interesting disabled folk and discover what makes them tick.
KATE - And every Friday on the other weeks we have shorter podcasts. This coming month is looking great with a mental health takeover by Seaneen Molloy and Mark Brown, plus another instalment from brilliant autistic presenters Robyn, Jamie and Lion. Yes, the people have spoken. Due to popular demand the dynamic duo are back for their own short series that you can get on this podcast feed.
LUCY - So, if you're listening to this on AMI Audio in Canada or on the BBC website don't miss out, subscribe to BBC Ouch on Apple podcasts or wherever you get your podcasts from and they'll be delivered to your device as soon as they go live.
KATE - Now, let's meet the guests that are here in front of us. We have Esther Fox. Hello.
ESTHER - Hello Kate, nice to meet you.
KATE - And you. And Christopher Smith.
CHRIS - Hiya.
LUCY - So, Esther, you're behind Brave Poor Things that we mentioned earlier. It sounds rather provocative. We'll talk about it in length later but in short what is it?
ESTHER - It's the culmination of three years of research actually about an interesting building, but more than a building, it was actually a kind of opportunity for disabled people to come together in Bristol. And it was set up in, well the building was built in 1913. But you're right, it's a provocatively titled piece. We've got a big exhibition at M Shed in Bristol at the moment exploring the history of that space, but also asking some contemporary questions about how we think about that sort of language today and whether things have really shifted very much.
KATE - Brilliant. Coming back to that later. Chris, just before we start, you have tics, don't you? They seem to be physical tics, so if we hear some bashing about on the desk they're likely to be…
CHRIS - Yeah, I don't have very many verbal tics but I've got a couple of really annoying ones that sometimes hop in. But hopefully they won't.
KATE - Okay.
CHRIS - One of them sounds like when you're talking to a horse and you go, tck, tck.
KATE - Okay.
CHRIS - I sometimes do that at the worst possible moment usually and it looks really bad, it sounds really bad and people are like, 'what's going on there?'
KATE - Have you ever been chatting someone up and you're like, 'Tck, tck, come hither, come here to me'?
CHRIS - I've never dared chat anybody up in my life, but if people chatted me up I might have said it. [Laughter] I've only started doing it relatively recently; and sometimes if I'm really stressed out I start doing Eek-a-Mouse, you know the old reggae singer, if I'm in a queue or something or something's happening I'll be going, 'bang, bang, billy bang' just little bits of things out of songs.
KATE - Cool. Okay, well if you hear any of that that's Christopher, so that's what's going on.
CHRIS - Yeah.
KATE - But you're a bipolar punk singer who writes comedy songs. Now, we can't play or even link to 99% of them on the BBC though because they're crammed full of sweariness and adult themes and all those fun kinds of things that we can't go into.
CHRIS - [Grunts]
KATE - Chris is looking slightly embarrassed about that.
CHRIS - Not embarrassed. I'm just like pretty amazed that the BBC have even got in touch with me. I'm just finding it a bit like baffling in a way. I sometimes do a double act with Jess Thom, and Jess Thom goes out under the name of Tourette's Hero, and we do double acts together sometimes in the festivals and we did once get asked, we did one up in Birmingham, it was in a park, and the lady said to me and Jess, "Listen, we can't have any swears". [Laughter] I felt like saying, "What have you booked us for?"
LUCY - Can we just say a little bit more about Jess and about what she does and about her tics, just for the listeners?
CHRIS - Yeah, of course. So, if you've not come across Tourette's Hero before, Jess Thom she has very big motor tics, physical tics, makes her life quite hard. She has quite a lot of seizures, which is not like epilepsy, it's like an over-stimulus. I have them sometimes as well where you have a seizure because your brain is sort of glitching because all of your senses are mega, mega turned up and things can be really over-stimulating. And sometimes for me and Jess, for different reasons, end up doing things you don't mean to do. Like sometimes Jess if you touch her very lightly, which I did after a gig once, I just was like, "It went so well", I was like, "Didn't that go well?" and I put my hand on her shoulder and she just turned around and punched me really hard three times. I thought, 'oh right, I forgot about the lightness of touch thing'. It's like an overload of her head and she has to make you stop.
KATE - And what are your tics like?
CHRIS - Mine are not the same like Jess's really. Mine are something to do with a side effect from medication that was overused a lot about 20 years ago or so on me, and then it's got this late onset side effect where you start to lose the control over your movements and stuff and you get facial movements like tics. The best way I can describe it it looks like your gurning. If anyone out there from the days of the rave scene or what have you, it looks as if you've had loads of Ecstasy. Obviously I haven't, but it's a bit frustrating. And it can be a bit of a thing where sometimes I get noticed by people like bouncers and stuff in clubs who then come and give me grief about it. I've even had people try and hold me still. It's like why are you even doing that? Why would that even occur to you to do that? It's an odd one.
LUCY - Chris, why were you given that medication?
CHRIS - I went into hospital, I was in my 20s, I'd had a little run of bad events, a bit of bad luck really. Me and my younger brother got attacked on the street, some lads with iron bars and stuff like that jumped us and hurt my brother pretty bad, smashed his head in half basically, not his whole skull, but his whole head split at the top. The whole thing was pretty traumatic. They even followed us into casualty to finish us off and stuff like that. It was quite heavy. And a few days later I still hadn't been to sleep, I was like really… They did my house as well. It wasn't safe to go back to my house. Told us if they ever seen us again they were going to kill us etc. etc. So, it was quite frightening and everything. And then foolishly I, in my idiot wisdom at that age, I thought, 'oh I've been awake three days and nights - I'm really terrified out of my mind - I'll eat a big lump of cannabis. That'll sort me out, that'll get my sense of humour back and then I'll fall asleep'. So, I did that and then had a seizure - not knowing what one was. At the time I hadn't had any. And in my mind, in my tripping state of sleep deprivation, having eaten this cannabis, I was convinced that I'd died, because to me it felt like my soul was leaving my body in these convulsions. But being dead at that point was a massive relief because I thought, 'I'm safe now'. I was a bit upset, I was telling my brother, "You'll have to tell mum like. Give her a bell and let her know I've died but basically it's not that bad once you've died". And because I was sure I was dead most of my friends and that are going, "Christopher you haven't died, mate. You could do with putting some underpants on but you've not died" and I'm like, "No lads, honestly I've died. Stop. You're not listening to me".
LUCY - So, do you think that was the start of some mental health problems?
CHRIS - Well, it was the start of everyone in the house going, "What's going on mate?" and then I had another fit, which everybody then saw. Because the first fit I had was upstairs in the bed. So, because I fitted, common sense, fair play, I understand why they did it, they rang an ambulance. So, they took me into a hospital, not a psychiatric one, just like the accident and emergency, and I'm there strapped to this like stretcher on wheels thing, all the drunks are shouting - A&E on a Friday night - and I'm shouting at the drunks going, "Do you mind? I've died here. Have a bit of respect for the dead!"
And then they put these heart monitor things on me, because I did have a bit of a mad heart rate and stuff, and then I think I must have had a bit more fitting, a bit more seizing, and the things came off my chest. But when they came off then the little monitor went [makes flat lining noise] so I'm like that, "I told you! Can I not just leave now? What are you playing at? You're wasting your time here; I've died. Can I not get on with being a ghost and all that?" So, obviously I have never written a song exactly about this, but I might do one day because I was going to write a song called Never Tell the Ambulance Men You're Dead, because obviously it affects where they take you next; has a bit of an effect on what happens next. So, sadly for me I ended up getting taken to a psych hospital.
KATE - It all sounds awful, but there was that…
CHRIS - It was yeah. It was grim. I was only like 25, and at the time I was just playing in a band. I'd never been to a mental hospital, never had any concept of it. And they came back about five in the morning and they said to me, "We've spoken to a doctor and you've been sectioned". I said, "What?" I didn't even know what that meant.
KATE - But then you got diagnosed with a mental health?
CHRIS - Yeah, I got diagnosed with at the time they called it manic depression, but it's the same illness as what they now call bipolar disorder.
KATE - And do you still have that? Do you still live with it?
CHRIS - Yeah. It's an odd one, it's an odd one is that because sometimes I think, 'were they right? Did I really?' because what they treated me with being so off my head, they decided that was a manic episode. But then again if I perhaps had been somewhere where I could have gone somewhere safe and the cannabis that I'd eaten would have worn off, and then I would have wised up and gone, 'oh I haven't actually died' I might have just got over that. So, it's an odd one.
KATE - When you work with Jess you call it the Tourette's Bipolar Alliance.
CHRIS - Alliance yeah.
KATE - So, you clearly identify with that a bit then.
CHRIS - Yeah, I identify with it in a lot of ways, yeah, because I've definitely had savagely massive bouts of depression in my life, definitely. And there were a couple of chunks of time which you could describe as mania. Mania being like, I would describe it as you're unable to sleep. People who are manic they speak, they call it pressured speech, it's like a rush of ideas coming out of you and it feels really important that you have to say these ideas. I don't know. It's a funny one. I've been on meds for it.
KATE - So, Chris you're going to stay with us throughout the show.
CHRIS - Yeah.
KATE - We know that you're used to making up songs about Jess' tics as you go along.
CHRIS - Well, not so much about the tics as the tics we just run with them. When we get on stage what we'll have is a title - it's kind of what I do in my own solo thing: I've got a title, a concept, a story, but the actual lyrics will be different every time.
LUCY - It's a bit like how we approach the weather then. We know basically what we want to say but we don't have a script before we go.
KATE - I'm really hoping that the weather is not quite as sweary as Chris' songs are though. [Laughter]
CHRIS - I've managed to not swear at all since.
LUCY - You've done very well.
KATE - Very well.
CHRIS - My mum'll be proud.
KATE - Anyway we'll come back to you and see what we can get out of you later.
CHRIS - Oh aye.
LUCY - Now to Florida. Let's meet America's Got Talent finalist Mandy Harvey. Hello Mandy.
MANDY - Hi. How are you guys doing?
LUCY - Very well thank you. Thanks for joining us.
MANDY - Oh thank you for letting me be on your show. I'm very excited to be here.
KATE - Now, Mandy lost her hearing ten years ago when she was 19. She can speak but she can't hear us so you might hear interpreter Amber in the background signing what we say.
Mandy's recent appearance with an interpreter on America's Got Talent got lots of 'ahs' from the audience who were clearly baffled that a deaf person could actually sing. An original song got Mandy through to the live finals where she eventually came fourth.
LUCY - Often with these big talent shows we find the contestants haven't just picked up a microphone for the first time. In fact you've been a regular performer for nearly a decade with four studio recordings and have published an autobiography too. In it you devote a whole chapter to your strong views on pity, so how did you feel about the audience reaction at the time?
MANDY - You know it was an interesting thing because when I first did my initial audition I made a point to make sure that the producers did not tell any of the judges about my life or my story because I wanted to just walk out on stage and play a song and be judged for that, obviously they ask you a couple of questions beforehand, so they didn't have a lot of preconceived notions when I first started singing. You could kind of see in their eyes they were like, 'oh boy, here we go'. And then as I started singing I think their nerves kind of calmed a little bit. But I was very concerned that they would just judge me on a pity vote instead of who I really am. And who I am is a musician and I want to be viewed as a musician first always.
LUCY - Here's a clip from that famous America's Got Talent Audition.
SIMON - [Applause] Okay Mandy, so I think I've worked this out. You're deaf?
MANDY - Yes, I lost all my hearing when I was 18 years old.
AUDIENCE - Ah!
MANDY- I'm going to sing a song that I wrote called Try.
SIMON - Okay. Can you tell me what it's about?
MANDY - After I lost my hearing I gave up, but I want to do more with my life than just give up.
SIMON- Good for you.
AUDIENCE - [Applause and cheers]
SIMON - Good for you.
MANDY- [Singing] I don't feel the way I used to. The sky is grey much more than it is blue. But I know one day I'll get through. And I'll take my place again. If I would try.
KATE - I mean, you were already quite successful without America's Got Talent. You had some albums and you were performing. So, what made you go on the show?
MANDY - I really wanted to encourage people and I really wanted to change the idea of what is possible and to show that deaf can. And what better place to do that than on national television? And so it was definitely not my idea; there were a lot of people who encouraged me and pushed me to do it and so I didn't think about any of it.
KATE - Was it that idea of pity that put you off do you think?
MANDY - Absolutely. Well, it's not just pity, it's you're turning on a bunch of people to just stare at your life and everything that you do and judge you. And I was really concerned that the deaf community would be upset with what I was doing, because when I initially started singing I got a lot of backlash from certain people in that community because I was promoting, "oralism" and doing something that was…
KATE - What is that? Explain that to me.
MANDY - There are a couple of different camps in the deaf community that I have come across, and some of them are very accepting to doing really whatever you want to do; others are very much a 'don't speak, only sign' community. And so when you're doing something that is living inside the hearing world as an activity, such as music and singing, it can be frowned upon because we're supposed to be encouraging ASL usage only. But that's a certain camp. I used to get some pretty strongly-worded letters and death threats when I first started singing, but those kind of have been washed away with all of the overwhelmingly positive emails that I've been getting. So, if it hacks off a couple of people oh well, you know, it's encouraging a heck of a lot more, so they can just get over it.
KATE - Quite right.
LUCY - Definitely. Can you tell us a little bit about how you went deaf?
MANDY - Absolutely. I have a connective tissue disorder called Ehlers-Danlos syndrome.
KATE - Ooh-hoo, same as me.
MANDY - Oh yeah.
KATE - Yeah.
MANDY - Fellow zebra.
KATE - That's right.
MANDY - Fantastic. I'm type three. I have the hypermobility problem. And when I was a senior in high school I was walking in PE class and dislocated my leg at the knee and then ended up having to have six major surgeries within a year and a half, and this was before we knew. We just thought I was very hypermobile; we didn't understand that it affects everything in your system. So, you have such a big stresser plus a bunch of neurotoxic medications and antibiotics that your body is flooded with, and I don't respond to medication so they flooded me with even more. And then I was 18 and I had grown up with hearing issues so I was already predisposed, so it was kind of a perfect storm that all hit at one time.
I didn't notice it quite at first because I had grown up lip reading and overcoming being hard of hearing, so I had overcompensated to a point where I did not know exactly when I first started losing large chunks of hearing, but I noticed it in my first month at music school when I couldn't understand my teachers talking anymore, in psychology class actually.
KATE - So, you went to music school first and then you started to lose your hearing while you were there. That's probably one of the worst places to start losing your hearing, isn't it?
MANDY - I wouldn't recommend it to be honest! Well, you know, music was my life. I never wanted to be a performer; I just wanted to do music education, because at that time the idea of people staring at me or getting up in front of people and singing a solo made me want to die. My nerves could not handle it. I just wanted to be a part of music in an educational way, and so I got accepted into two different universities and I was living the dream. It's a beautiful moment when what you feel like you're meant to do and what you are doing mesh up. And within a month that happy dream bubble burst in a very public loud manner.
KATE - What happened?
MANDY - Well, I couldn't understand my teachers talking anymore. I went to audiologists and I had lost 30 to 40 decibels in that month, and they were worried that it was progressive, and it was. And so by Christmas I was legally deaf and then getting fitted for hearing aids, which was my last hope. And then I had my new hearing aids and started a new semester, and I was sitting in music theory class and they started doing dictation tests which is where they play the piano and you have to chart out every note that is being played in rhythm and time, and I was sitting there waiting for the test to start and I'm looking around the classroom and all these pencils are moving and everybody starts finishing their tests and getting up and handing in their papers and I'm just sitting there waiting for the test to start, and one by one they left and they all stared at me as they left. And that was the last day I was a part of the music education programme.
And so they hand me this paper saying, 'sorry but…' and I was like, 'well this has got to be wrong'. And I'm walking back to my dorm holding this piece of paper and I'm like, 'this has to be a mistake. I'm just sick. This is going to be totally fine' and then this biker comes up behind me and he's yelling, "I'm on the left! I'm on the left!" I didn't hear him at all even with my hearing aids in, so he smashed into me and I broke my hearing aids, and they're not super cheap. And I'm sitting there and I'm looking at my hearing aids and looking at this piece of paper and seeing the situation that just happened and I broke. That was the moment that it was real. I lost myself in it. I made the mistake of associating my entire identity with one single dream, and when that dream died I very much felt like I died. I became a husk of a person for a while.
KATE - So, how did you get from that point to then getting the golden buzzer pressed by Simon Cowell on America's Got Talent?
MANDY - That's so weird! Well, I left, I finished the semester out of stubbornness and then I moved back home. I started taking ASL classes.
KATE - ASL being American Sign Language.
MANDY - Yes, American Sign Language, sorry.
KATE - So, you started learning ASL at home?
MANDY - Yeah, I started taking ASL and getting involved into the deaf community and making friends and finding a way to communicate, and that gave me the confidence to start to say yes to things. It kind of helped me realise that I wasn't just a broken person, that I was just different.
And so when my dad asked me to play guitar with him it didn't seem like a completely bizarre request, so we just sat down and he picked up his guitar, I picked up my guitar and I watched him and followed rhythm and followed the same finger patterns. It had been an activity we had done my entire childhood. And from there he's like, "Hey, why don't you learn how to sing a new song?" And I honestly was aiming to fail; I just wanted to do as much as I could, do the best effort that I could and prove that it was impossible so that we would not talk about this again. So I got sheet music for a song my sister picked that she had heard on the radio One Republic Come Home, and got a guitar tuner and sang each individual note one after another, and every time I made a mistake and that little light wasn't green I started the song over again. It took me eight to ten hours of not getting up from the stool to sing through the song correctly once. And once I did that I sat down with my dad and I closed my eyes and I said, "This isn't going to work but this is the first note, that's what the tuner says, and I'm just going to go for it" and I closed my eyes and I sang through the song, and I was right. My pitch that I had been born with and my muscle memory from 19 years of hard study all came together and I sang through the song correctly and that promoted me to move on.
KATE - So, you were born with perfect pitch then, which is where you can hear the note in your head and sort of sing it?
MANDY - Yeah, it's kind of bizarre. I just focus on one note, normally it's the C, and then once you find middle C you can modulate to your starting note regardless of where it is. If you understand your scales and how your intervals work you can say, "Okay, I need to go to this note which is a half a step up or a full step up" so then you modulate up and feel it on your throat and feel that movement track up and down your throat. It's a lot of work but I love it.
LUCY - How did it feel to realise that you could still sing?
MANDY- I didn't believe it was real, because my dad was the one who said it worked and he's kind of tone deaf [laughter] so I was like, "Sure to you it's perfect but let's record this". And I sent it to my vocal coach and she was like, "What? No, that's amazing! You've got to start taking voice lessons again. What do you want to sing?" "Well, I want to sing jazz". "Okay" And then she connected me with a jazz club and I sang there for their open mic nights. At first it was just one song, and that was supposed to be the end of this journey: okay well, I sang one song at a jazz club without being able to hear. Done. How amazing is that? And I was like throwing up and nearly passing out and crying most of the day leading up to that moment.
LUCY - Yeah I bet.
LUCY - But I did it. And then they were like, "That was amazing. You have to come back next week". I was like, "Oh okay". So, then I came back the next week and I sang a couple of songs, and then soon I was singing for three hours and then I was having my own concerts, and then people asked me to make an album so then I made an album, and then I started going on tour and then that led to another album, and that led to singing at the Kennedy Centre. And it just kind of rolled out, like I've been just like cast into this high-moving river and just going along. I don't know where I'm going but it's quite a beautiful journey.
KATE - I just can't understand how other musicians would react to you at first before they hear you. Did you meet any resistance from musicians who said, "You can't do it, we're not going to play with you" or "This is crazy"?
MANDY - I meet people who are like that all day long! It doesn't matter if you're musicians or not. But yeah, mostly it's an initial fear that you see in their face and they're like, 'it's not my reputation on the line. I'm going to play my part perfect and she can just do whatever she's gonna do'.
But I was very fortunate that I've been teamed up with a lot of very amazing musicians who have a lot of heart and who I trust very much, and I tend to work with the same people over and over and over again and we establish ways of communicating so that I know what's going on.
KATE - So, what are those ways? How do you keep time? How do you know what's happening?
LUCY - Keeping time is easy because you feel it through the floor, so you can feel the rhythm. Understanding that when you're starting a song you'll have a certain amount of measures before coming in, and that's established beforehand. And then when I look at my musicians when it's coming up to my time they'll nod their head in to let me know that it's my turn to come in, that I'm correct with my counting, and then I'll start singing. And then someone will take a solo and that's for a designated period of time and I count the whole time, so I'm feeling the beat through the floor and counting measure by measure by measure until it's my turn to come back in. Then they look at me the measure before and then they nod on the downbeat and I start singing. If I come in and they need me to come in at the top instead of the bridge they'll point at their head for the top or they'll sign bridge to me if I need to come in at the bridge or if they're looping me back around. And any time they're playing solos with each other everybody looks at each other in the eye and then everybody looks at that person who's playing their solo so I always know who's playing what when. It's a beautiful thing to be part of a team.
My touring band that I do everything with now they're just brilliant and they love being open and communicating with me. And all of them are learning ASL; they're really dorky with it. We've got some home signs telling me what key things are based off of how many sharps or flats there are in the signature of it, and they've learned all their ABCs and basic sign language and they're improving every day so the wall of communication is breaking.
KATE - I've dappled in singing a little bit. I don't know if you know this about me listener but I do like to sing occasionally. But I still have the fear of finding that note even when I can hear the piano.
MANDY - What I would encourage everybody to do is get a visual tuner. I use them all day long every day.
KATE - Is that just an app you can get on your phone?
MANDY - Oh there are tons of them. My favourite one is Pano, P-A-N-O. It's a free app, you can get it on Android or Apple as a lovely little guy, so you can hum into it and it will show what you're singing and it'll show you how off you are, and then you just keep adjusting until you lock into that note.
The fear of being wrong that's something that I don't have any control over anymore. Losing my hearing was always my biggest fear, so what's the worst that can happen: singing the wrong note? Okay.
LUCY - I do that all the time!
KATE - But you're probably not singing in front of thousands of people though, Lucy.
LUCY - Yeah, that's very true.
MANDY - What's the worst that they can do? They don't like it? Who cares? It's not going to kill you. It can't. Because I surely knew in my heart of hearts that losing my hearing was going to kill me, I knew that, and it didn't. There have been a couple of times I've started the song in the wrong key and everybody in the audience's head does that tilt thing of, 'ah, that hurts!' Then we stop the song, we all laugh together, I go over to the piano, I sing the note that I'm singing and then he shows me where I am and shows me where I'm supposed to be and then I modulate down in my starting note, we start the song over again and we go for it.
KATE - Now, Simon Cowell seemed to really love you on America's Got Talent. Has he signed you up yet? What are you up to at the moment?
MANDY - Right now I'm touring and doing concerts. I'm still waiting. I have a hold with Sony to see if that's something they want to do. So, my fingers are crossed. But regardless of whether or not Simon picks me up - which I really hope that he does; I think that would be a lot of fun - I have a feeling that there will be other opportunities out there and it's not going to slow me down in the least of doing music. I have a full album of original music ready to go.
KATE - Mandy that was really interesting. Thank you so much for joining us. You have got a book out which Lucy and I have both read and absolutely loved so can you just tell us what it's called and how we can get a copy of it?
MANDY - It's called Sensing the Rhythm, Finding My Voice in a World Without Sound. It's available wherever books are sold.
KATE - Thanks Mandy. Esther, let's turn to you now. Before we chat about Brave Poor Things, you're very interested in the genetics of disability.
ESTHER - Yes, I'm interested in genetics as a kind of subject, but also the ethical issues that we're associated with now when we're thinking about genetic screening and how that's becoming much more of an issue for many disabled people I think. What I'm really interested in doing is shining a spotlight on some of that ethical discussion because I think actually we're not having very many disabled people's voices in that debate, and actually we need to challenge what people think about us, quality of life, value of life and how people with a lived experience of a genetic condition may have a very different understanding of it to what the medical profession may see.
KATE - So, are you saying that you have a genetic condition, SMA is genetic?
ESTHER - Yes.
KATE - So, you are worried that other people who might be like you would be screened out in the future?
ESTHER - Oh it's incredibly likely, probably 100% likely of that, because SMA is one of the conditions that's going to be regularly widely screened for, like Down's Syndrome.
KATE - And how does that make you feel?
ESTHER - It's a very difficult thing because I feel that I have an extremely rich life. I feel I'm very lucky to have my circle of friends, my family, my job, my interests, and I don't see that I'm in any way disadvantaged. I do think that there are barriers in society that disadvantage us, but if we spent the money on tackling some of those barriers in society rather than investing it all in trying to screen out conditions I think maybe we'd make society actually just a much better place for all kinds of people to live in. Because it's about having tolerance and understanding of difference, and also thinking about the value people have when they are different. And if we are going to screen so that we're going to try and make people more and more like a standard type of person what are we going to lose in that process?
LUCY - Yeah, where do you stop, I guess? What do you stop taking out?
ESTHER - Hm. But having said that I know other people may have a different opinion on that. So, I think it's really important that women have a right to choose and those kinds of issues as well. There are a lot of issues around reproductive choices and rights for women. But my perspective I want to challenge what people's preconceptions might be about what my quality of life might be and actually how valuable lots of people with genetic conditions are to our world and our understanding of humanity I think.
LUCY - Esther, you told us a little bit at the start about Brave Poor Things, can you tell us a bit more and I guess also what a guild is?
ESTHER - Okay. Brave Poor Things in Bristol is actually an exhibition based at M Shed, but the exhibition has come from three years of research and we've been looking at the guild of the Brave Poor Things which was established by Ada Vachell, but she was inspired by somebody called Grace Kimmins. Grace Kimmins inspired all these Victorian philanthropists to set up these guilds which was an opportunity for disabled people to come together through a shared lived experience of disability and to form a community actually. In about two years I think there were about 200 disabled people that were coming together to meet in Bristol and to get an education, to also get apprenticeships. It's a members' organisation really for disabled people.
KATE - And it was called Brave Poor Things?
ESTHER - Yes.
KATE - Did the disabled people themselves come up with that name?
ESTHER - No of course not. No!
KATE - Why would anyone go to something called Brave Poor Things?
ESTHER - Well, one thing obviously we have to remember was the time this was established in. But of course it's a highly controversial name.
KATE - I love it. I think there's something about it that just makes me think, 'oh yeah, I'll pop along'.
LUCY - It clearly worked, didn't it?
KATE - Yeah.
LUCY - It was successful and lots of people went.
ESTHER - Completely. And actually it was the first time. If you think back then there was no provision at all. So, actually if you were suddenly presented with an opportunity to go and meet with other people, to learn skills - the apprenticeship programme for instance was really ground breaking because what they'd did is they'd pay for you to learn your skills, to learn a trade, and then once you got a job you would pay them back. So, it was kind of like a loan system, which at that time was revolutionary because that would get you a step up to be able to provide for your family.
KATE - And did it lead to people getting jobs?
ESTHER - Yeah absolutely. Until the war came along, which again is interesting about hierarchies of disabled people, because once the soldiers came back after the First World War many of the disabled people that had been on the apprenticeship scheme lost their jobs because they actually thought that the soldiers were more worthy than the sort of normal disabled person.
KATE - Wow.
ESTHER - Yeah, it was a really successful scheme. And Ada Vachell had a really interesting fundraising technique and she basically thought, 'if you've got enough money that you've got a telephone then you've probably got enough money to give us money towards our building' so she literally went through all of Bristol's telephone directory and rang every single person in it…
LUCY - I love it.
ESTHER - … and asked them to give them money.
KATE - Good for her!
LUCY - Brilliant.
ESTHER - She was a very entrepreneurial spirit. But you're right, the language is really troubling, certainly today. Also you asked about the name, was it disabled people themselves that came up with the name, well no it wasn't. We've also found in our records that actually many of the members really hated it, but it took them 12 years to even get the committee to have a discussion about how they hated it. And they changed it to something which I think is no better, which is the Guild of the Handicapped. But apparently they were a bit happier with that.
LUCY - Was that language just in the name or was it kind of through a lot of what they did?
ESTHER - Throughout. The records are quite shocking. And also what we've found very difficult is to hear the voices of disabled people themselves because all of the archive material is collected from the founders, so it's the minute books, and of course disabled people weren't actually on the committee because the committee members were all non-disabled people.
KATE - Wow, sensible! You don't want disabled people taking charge of anything!
ESTHER - Of course not. So, you've already got a skewed voice there because we're only hearing from the founders. So, all of that is indicative of what the actual guild was I suppose.
There was this camaraderie. For example they had a guild promise, and the guild promise was: I will try to be a brave and loyal soldier of the guild, to be truthful, sober, honest, good-tempered, to think of others before myself and every day of my life strive to be laetus sorte mea - which is happy in my lot. This idea of being happy in my lot you can turn round because it's about this being incredibly grateful for anything you get. But on the other hand when I was talking earlier about genetic screening and this worry about disabled people being screened out and actually saying, "I'm very happy with myself, I'm happy with my own identity and I wouldn't want to change that" so it could be turned into various different meanings really.
KATE - So, what can we see at the exhibition then that's going to be in Bristol?
ESTHER - Well, we've got lots of original archive material, loads of fantastic photographs, things like some of the jewellery that they made on their schemes. But also it just tells you the whole history of the building because although it opened in 1913 it didn't actually close till the 1980s, so it had an incredibly long history. One of the reasons we think it closed was perhaps because disabled people weren't really leading the vision of the organisation. At the end of the exhibition there's a whole area for commentary about what people think about the language, have things really changed.
We've tried to really think about accessibility throughout the exhibition, so there's audio description, there's BSL interpretation, there are tactile models, and we've really tried to push the boundaries a bit about making something look really lovely and professional and not just be side-lined into a back corner talking about an education resource. This is an exhibition for everybody to go to.
We're saying there's an estimated one billion disabled people in the world, yet how much do we really know about our heritage and why aren't we having these displays more in our major museums?
KATE - So, is this piece part of a bigger project?
ESTHER - Yes. We've got a large fund from the Heritage Lottery fund. It's been a three-year project called History of Place, and that's part of the Accentuate Programme. And we've done lots of work across the country, so we're actually looking at eight different historic sites. The Guild of the Brave is only one of these. We're working in Liverpool with the Museum of Liverpool. We're also working with the V&A in London so there'll be an exhibition there. And we've been working with local groups and local disabled people to really reinterpret that history because, as I said, part of the issue is the archive material itself is mainly in the voices of the founders, doctors, teachers; very rarely disabled people. But through this project we've been able to work with disabled people on the ground, so we've been doing film making, digital gaming so that they can actually have a creative process to reinterpret some of the historical archive and put their voices back into the discussion really.
LUCY - When can we come and see the exhibition? When does it start?
ESTHER - It's just opened, we opened about two weeks ago, and it runs all through till April, so there's plenty of time to come. And do keep a lookout for the exhibitions in Liverpool and the V&A too.
LUCY - Excellent, brilliant. Well, thank you very much for joining us.
ESTHER - Thank you.
KATE - Now, Chris, you're still here with us.
CHRIS - You know like you were saying about screening and this and that, I almost like did that to myself in a little way in that they told me at 25, "You've got manic depression" which now they call it bipolar, but same thing, and they said, "It runs in families". It was quite a big thing to me that I thought, 'I'd better not have any kids'. And now I'm actually thinking that's really wrong, why did I think that? That's like preventing a life that could be.
ESTHER - Exactly.
CHRIS - And also there seems to be almost like a pressure on people with disabilities to almost justify that they should have a life. You're saying you have a rich life…
ESTHER - Yeah.
CHRIS - … well, there are people out there who don't have a rich life who've got no disabilities. Nobody's asking them to justify themselves walking about. It's a mad one. I can regret not having any kids but it's one of them.
KATE - It's never too late.
ESTHER - You still look quite young to me.
CHRIS - Well…
ESTHER - It might still be possible!
KATE - Do you write about mental illness?
CHRIS - Write is a bit of a strong word for what my songs are because they just come out of my mouth when they're ready. If I had to write one on purpose I couldn't do it, but if they're ready they just kind of come through, and then if they're good I just kind of keep them.
LUCY - And so the topic can by anything?
CHRIS - Kind of yeah, I guess.
LUCY - They just come to you.
CHRIS - Like I wrote a song called I Hate Babies, not because I actually hate babies but the deep root of it was actually I was a bit gutted really, all my friends had babies and I didn't, so then I turned it round in a sarcastic way. And everyone knew it was tongue in cheek, I hope, but it was kind of saying I hate babies because none of my friends go out anymore, they've been stolen by babies and you can't trust babies, they nick your friends. Babies are just unreasonable and they're not nice to hang out with.
KATE - That's so true!
LUCY - Does this remind you of…?
KATE - Yes, it feels very close to home!
CHRIS - Yeah. I've got songs, my songs are called things like I've got one called The Pigeons Told Me to Shoplift. I could always sing that, that could be the song that I could do.
KATE - That sounds great.
CHRIS - That has a nod to mental illness and nods to institutional life and stuff in it.
LUCY - So, that's almost it for the November 2017 Ouch Talk Show. If you like what you hear check out the recent archives for a slightly surreal conversation about blind people and colour and unique chat between two autistic people about stemming sensory overload and social situations.
KATE - It just remains for us to thank all of our guests, Mandy Harvey, Esther Fox and Chris Smith. Thanks to the team, Damon Rose, Daniel Gordon and Beth Rose. The producer was Emma Tracey. The studio manager was Pete Smith. I've been Kate Monaghan and this has been the lovely Lucy Martin. How did you find that Lucy?
LUCY - It was great. Thanks for having me.
KATE - Not too traumatic? Not too many intrusive questions?
LUCY - Still standing, still breathing, which is a success in my book.
KATE - Excellent, excellent. Thank you for coming.
LUCY - So, we'll leave you with Chris and his song The Pigeons Told Me to Shoplift.
[SONG] - The pigeons told me to shoplift. Their voices were so persuasive. The pigeons they controlled my mind and shortly afterwards I did find myself in shops putting things in me coat and looking around and running away. And running away from a security guard. He was overweight but he thought he was hard, and that's when he involved the police on me. And the magistrate didn't believe me about the pigeons who told me to shoplift. He said, "Son, I think you're crazy, I'm sending you for psychiatric reports". I said, "Please don't send me for psychiatric reports" he said "I'm sending you for psychiatric reports". "Please don't send me for psychiatric reports", he said, "I'm sending you for psychiatric reports".